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Atypical liver hemangiomas?


greenbeanie

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greenbeanie Enthusiast

Hi folks! I haven't posted in a while because my daughter and I are both doing great since we removed a few certified gluten free products from our diet last spring that had trace gluten below 20ppm. In a roundabout way the rise and fall of my daughter's blood tests along with my reaction to trace gluten cc (before we knew there was any) and quick disappearance of fat malabsorption after eliminating those products actually led my GI doctor to give me an official celiac diagnosis on clinical grounds even though I did not meet the usual diagnostic criteria. So I am now getting proper follow-up, which is great. 

 
However, one consequence of this is that my doctors are taking a harder look at a variety of minor/moderate abnormalities that had come up on various tests in the past, which they had dismissed as inconsequential at the time. I have two small lesions on my liver, one of which has been confirmed as an atypical hemangioma and has remained stable in size. The other lesion may also be an atypical hemangioma or adenoma, but neither ultrasound nor MRI could get a clear picture of it. An abdominal CT scan is recommended, but I've had multiple CT scans and other high-radiation tests over the past ten years, and I'm reluctant to get another one when the lesion is almost certainly benign and the CT scan might not even get a better picture of it than the MRI anyway. My liver is otherwise normal in size and appearance, though I do have a couple small cysts on my spleen too that they are not concerned about. My recent liver panel showed normal enzymes and other blood tests. I had a positive ANA in the past that has normalized too. I have no symptoms, and the liver lesions were an incidental finding from my GI's original work-up a couple years ago. I'm seeing a liver specialist in a few weeks. Meanwhile, I did find a recent article about an association between celiac and hepatic hemangiomas:
 
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Has anyone had a similar experience with multiple atypical hemangiomas or adenomas? Did they grow or shrink over time? Suggestions for what questions I should ask the liver specialist? 
 
After so many years of trying to get doctors to take my concerns seriously, it's odd to be in a position where I actually feel sure that the rest of the weird stuff isn't serious and will keep improving with time, whereas my doctors are suddenly treating everything as significant. Both liver lesions are small (less that 1.5cm). I obviously don't want to ignore a problem that really could be serious, but I also don't want to have unnecessary high-radiation tests. 

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    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
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    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
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    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
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